Suffer the Little Children ... Or Suffer the Consequences

by Maria Dibble

Fifty years ago last month, one of the US Supreme Court's greatest landmark decisions was announced, in the case of Brown v Board of Education. The Court ruled that racial segregation in public schools is unconstitutional. This decision began a long and arduous process of desegregating our education system and abolishing "separate but equal" schools--a process that, sadly, is still not finished.

About 20 years later, our nation woke up to the fact that this principle also applies to children with disabilities--with the passage of the Education of All Handicapped Children Act (now known as IDEA). Before that law was passed, most children with disabilities weren't allowed to attend any public school, let alone an integrated one.

And three decades after that, we still practice this policy of segregation and "separate but equal", not only with many black children, but with children with disabilities. All over our state, students with disabilities are receiving a separate and inferior education to that provided to nondisabled students, and the vastly unequal results are showing up in test scores.

NY State Education Commissioner Richard Mills eloquently summed up the entire problem in two remarks about those scores that were recently quoted in the Binghamton Press & Sun-Bulletin. He said, "It's a thoroughgoing change that is required. I don't want anyone to suggest or even think that children with disabilities can't do this. All they have to do is look at the charts that show how well students in other communities are doing. It's not the children-it's the kind of education that they're being offered." And in response to a suggestion that poorly-performing school districts should be sanctioned, Mills said, "This is not something that's going to happen because of a directive or order--it's going to happen because of continuous attention and continuous support."

Mills is right in his first statement. It isn't the kids. In the Greater Binghamton region, we have several substandard school districts sitting right next to the Johnson City Schools--a district that handles special education fairly well and produces results of which they are justifiably proud. And though I'm sure he didn't realize it, he also hit the nail on the head when he restated the State Education Department's longstanding position that it isn't going to take serious enforcement action when school districts violate the law.

Our nation's uneven progress with school desegregation shows that Mills's all-carrot/no-stick approach doesn't always get the job done. The problem with special education is the same as that with racial integration--attitude. There is blatant and widespread prejudice against students with disabilities in our schools. Yes, good special education requires lots of resources. But the good districts don't always have more money than the bad ones. In fact, some of them have less. The difference is that in good districts, the leadership really believes in quality inclusive education, and allocates the resources appropriately. Bad districts hand off disabled kids, and a lot of money, to BOCES. A district that keeps all its students in its schools can also keep all of its special ed money and use it to improve services. Administrators with the right attitude provide the planning, training, support and motivation for their employees--a proper balance of carrots and sticks--to do great things. When administrators have a bad attitude, it trickles down--and these are the districts where we hear CSE chairpersons muttering under their breath about "damned child advocates" and how much they'd like their kids to have a "fancy summer program" like kids with significant disabilities get to keep their hard-won skills from regressing; where teachers aren't afraid to say brutally nasty things about kids with disabilities in front of them, their classmates, and their parents; where aides change the diapers of incontinent kids in front of other students because it's too much bother to move them to a private room; and where kids come home from school black and blue from being tied to their chairs.

Our school districts must be transformed to ensure a commitment to inclusion by every person, from aides to the superintendent and everyone in between. Anyone who can't support such policies and practices must be encouraged to find other jobs where their negativity won't harm children with disabilities. Somebody in charge in each district has to start that process and stay the course through the inevitable resistance that will arise. And in some districts, that process won't start until somebody from outside shows the current leadership the door. That duty belongs to the State Education Department, and right now they are shirking it. Is this too radical a notion? Remember that it took the US Army to deliver the desegregation message in some parts of the South in the 1950s and '60s--and that in some places in the North, where the Army never went, little has changed to this day. We aren't calling for US Marshals and teargas--yet.

I know there are many outstanding and dedicated educators in our region who do their all and more for children with disabilities. I applaud your efforts and hope that others will learn from your excellent examples. There certainly are many "lone heroes" in our schools trying to do great work and not getting the support they need from their supervisors and colleagues. But I doubt that Commissioner Mills understands that the solution is to replace the people who refuse to provide that support with people who will.

The most recent local manifestation of bad attitudes has been a steady stream of parents reporting that schools suddenly want to move their children from successful included placements in their home districts to segregated programs. These programs are neither appropriate for the students nor desired by the parents, yet parents are being pressured to accept them. These programs provide very little academic training, and kids who spend much time in them during their "formative years" usually regress to a point where they are in danger of being isolated in segregated, "sheltered" "placements" for the rest of their lives.

One seven-year-old child was referred to BOCES's Preparation for Adult Living Skills (PALS) program, which has little academic content and was totally inappropriate for the child. The parents were told that their child could never get a regular diploma and that they should accept this decision and move on. It was only because of the parents' adamant protests, along with STIC's advocacy, that the parents won that battle.

Another parent reported that she agreed to move her son from an inclusive to a segregated setting to give it a try, after the school district insisted that the program would better meet his needs. After the move the child lost much of his ability to communicate and began to exhibit serious problem behaviors. He didn't have these issues in his previous inclusive placement. The parent successfully advocated to return her child to inclusion in his neighborhood school.

Other parents have said that some Committees on Special Education are now considering parents' signatures on attendance sign-in sheets at meetings to be the legally-required consent signatures for their children's proposed Individual Education Plans. This is illegal and a blatant violation of parents' rights. Parents have the right to refuse to sign the plan, and the school cannot proceed without negotiating an approved plan with them.

Study after study has shown the damage that comes from segregating children with disabilities--the loss of skills, the increase in behavioral issues, the decline of motivation and self-esteem, the inability to develop social skills, and most importantly the lack of academic learning.

There's also plenty of evidence that the districts and educators who see children with disabilities as assets in their classrooms and valued participants in the life of the school, and who view children in terms of their skills and abilities rather than their needs and deficits, are the ones who have positive experiences and successful outcomes. Unfortunately, a much more negative view of children with disabilities is the rule, not the exception.

One of STIC's staff was speaking to a teacher in a segregated BOCES classroom. In front of all the students the teacher said, "These children can never achieve their goals. Nobody cares about them. They just have to accept this and move on." Our staff person was in tears after she left, realizing that the students were getting no positive reinforcement or assistance in achieving their post-school dreams, and also knowing that with the right supports they could definitely succeed. How must the students have felt after hearing those comments? Would you want your child to be subjected to such an attitude?

Parents have repeatedly reported to STIC comments about their children from school staff such as: "He is very disruptive in the classroom." "She has no interest in what's going on around her." "He isn't motivated." "She can't do the work." "He refuses to cooperate." "You must accept that he can never be independent." And so on.

The Individuals with Disabilities Education Act (IDEA) requires that students be placed in the least restrictive setting possible, yet there is no enforcement to make this happen or punish schools when it doesn't. And every time one parent wins a battle with a school--usually, in our region, with STIC's help--it creates no precedent for the next child who comes along. This frustrating, never-ending struggle to reform the special education system one student at a time is not what the visionaries who created IDEA intended, and it is a huge drain on public resources--because it is the public that pays STIC and other advocates to carry it on. It must stop!

Fortunately, we have an example of a better way to go right here in our midst: the Johnson City School District. Bring up JC to other districts and the tension in the room becomes palpable. Instead of asking for help and trying to emulate a successful model, they resent JC for being so successful. Resentment is easy. Change is hard. Johnson City invested time, energy and resources to get to where they are. They knew that only by getting all of the staff invested in their new vision and only by fostering policies and procedures that changed attitudes could their dream become a reality. No it isn't perfect, but what system is? I challenge any school district out there: If you can do it better, please show us! But you must do it. We're done with excuses.

Fifty years after Brown v Board of Education and thirty years after the first IDEA law, more than 50% of students with disabilities are still segregated. This practice is always ineffective, and usually permanently damaging to the kids. They, their parents, and all of us taxpayers are paying the price.

Parents have asked STIC to assist in fighting these injustices and to finally make true and lasting reforms to our education system. We are combining our power and resources to make change happen. We're exploring all of our alternatives, including the media and/or legal action. Won't you join us in this battle for our children's education, equality and independence?

If you're interested in advocating for changes in the special education system, contact Maria Dibble at or (607) 724-2111 (voice/TTY).

June 2004


AccessAbility is published seasonally (Spring, Summer, Fall, Winter) by Southern Tier Independence Center. Letters, information, descriptions of disability experiences and ads are always welcome. Deadlines are February 15, May 15, August 15 and November 15.
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News & Analysis

HAVA Hassles

Disability advocates staged a protest in Albany on May 18 over an Assembly-Senate conference committee's failure to address voting accessibility issues. Two members of Rochester ADAPT were arrested, and STIC staff and consumers participated, in a blockade of the meeting room that trapped legislators for nearly 45 minutes before the State Police arrived.

The issue is New York State's ongoing failure to enact laws to implement the Help America Vote Act (HAVA). HAVA is a federal law passed after the disputed 2000 presidential election to establish nationwide election standards and to provide financial assistance to help states follow them. In order to qualify for assistance, states must reform their election laws to meet HAVA requirements. The legislature and governor have been diddlepooping around with this for over two years now. The real reason for the hold-up may be that both parties believe that anything that makes it easier for people to vote gives Democrats an advantage (because most registered voters who specify a party are Democrats), and if the 2004 election is as close as the 2000 one, the Republicans who control this state don't want reforms that make voting easier or vote-counting more accurate to affect the outcome. But you've probably heard that the big stumbling block is acceptable forms of identification for new voters.

The issue of most concern to people with disabilities is HAVA's requirement that all voting places, and at least one voting machine in each precinct, must be physically accessible. The legislature has showcased allegedly accessible voting machines from various vendors, but none of them really provides full unassisted access to people with all types of disabilities. The simplest solution would be for the state to eliminate its "full face" ballot requirement. The only other election districts in the nation that use this ballot are some counties in Delaware. New York politicians don't want to drop the "full face" ballot because it makes it easy to vote a straight party-line "ticket"; you just click the lever in your party's column for every office being contested. There is no other credible reason for preserving this antique system. Other ballots are organized by office, and the most accessible and least expensive electronic voting machines present each office race separately. If New York's politicians insist on the "full face" ballot, they are going to have to issue specifications for a voting machine that handles such ballots and is fully accessible to people with all types of disabilities, and get bids from vendors to design and build them. It will be absolutely unacceptable for the state to buy voting machines that are not fully accessible because they are the only "full face" machines currently on the market.

Frustration over political bullheadedness on this issue had been building in the disability community for months. Then this spring the conference committee held several public meetings without discussing the accessibility issues at all, and broke up in an ugly public shouting match over the ID issue. It was clear that the politicians had no serious interest in enforcing the voting rights of the 15% of New Yorkers who have disabilities, and that is what triggered the protest. Another "last" meeting was hurriedly scheduled and held on May 24. Disability advocates attended and access issues were discussed there briefly.

Now the politicians will resume their usual private negotiations, and will eventually pass some kind of legislation. At this point it seems fairly likely that the result will be less-than-acceptably-accessible voting machines, and disability advocates will probably have to take the state to court for violating HAVA before we get what we need. In any case, we're beyond all hope that anything will be done in time for this fall's elections, which, no doubt, is what was intended all along.

HUD Attacks Section 8

Push came to shove in Massachusetts in April over the federal Department of Housing and Urban Development (HUD)'s efforts to drastically cut funding for housing supports. HUD cut a deal in MA, but showed no signs of abandoning its strategic plan to reduce its total budget by 10% on the backs of impoverished people with disabilities. Disability advocates staged nationwide protest actions during the last week of May. STICsters attended one such event in Syracuse.

As we've reported previously, HUD wants to "reform" its Section 8 program, which provides rent and housing-purchase subsidies for the poorest Americans, including millions of people with disabilities. Section 8 currently works by committing to fully fund a certain number of vouchers to ensure that poor people don't spend more than about 30% of their total incomes on rent or mortgage payments. The vouchers pay the difference between that amount and what HUD deems a "fair market" monthly rate for a particular residence--which may be quite a bit less than the real cost of decent housing in many localities. Landlords or sellers willing to accept these vouchers can be hard to find, and regulations limit the size and quality of the subsidized homes; nobody lives luxuriously on a Section 8 subsidy. HUD wants to change the program to a block grant that doesn't guarantee that vouchers will be fully funded, that perversely opens up the program to people with higher incomes, and that removes rules that specifically set aside a certain number of vouchers for people with disabilities. At the same time, HUD plans to cut total Section 8 funding by around $1 billion for FY 2005, and more in following years. Meanwhile, cost estimates that are accepted by both Republicans and Democrats show that HUD will actually need to spend about $600 million more in 2005 to fully fund all of its existing vouchers.

As is typical when block grants are proposed, HUD claims that increased flexibility in program administration for Public Housing Authorities (PHAs) will cut costs and make up for the loss in funding. As is also typical in these cases, this is a lie. In fact, PHAs would only have two options: cut the number of vouchers available, or raise the participants' share of rental costs--to as much as 50% of their total income. This is such a harmful measure that it quickly ran into strong opposition on both sides of the aisle in Congress. HUD knew its plan wasn't likely to pass, so it made an end run around Congress's appropriations authority. It issued a regulation, called PIH 2004-7, that effectively caps its per-voucher spending at August 2003 levels. This means that voucher payments are no longer keeping up with rental-cost inflation. The inevitable result will be that landlords will start evicting Section 8 tenants. These people will become homeless, or be dumped back into large institutions, whose annual per-person cost far exceeds that of even the largest Section 8 subsidy.

In fact, that's what nearly happened in April. PHAs in Massachusetts, whose Republican Governor Mit Romney opposes the HUD plan, were set to issue 650 eviction notices, 60% of which would have gone to people with disabilities. At the last minute HUD and the state reached an agreement to prevent the evictions. But HUD has not disavowed its plans and there is now a bill in the House of Representatives, HR. 4263, to force it to do so.

This, of course, isn't really HUD's responsibility. President Bush's tax cut policies are ultimately to blame for the tight squeeze being put on every federal program. And yet, the Bush Administration keeps proposing new programs, such as its recent pledge to "end homelessness by the end of the decade", and its Money Follows the Person program to help people with disabilities move from institutions into the community, that will require more, not less, subsidized housing. The money just isn't there any more. Every penny that every such program lays out these days goes right into the red ink column. It's a house of cards that will eventually collapse, perhaps, as Bush's Health and Human Services Secretary Tommy Thompson suggested in a similar context, when the Bush Administration is no longer "around to find out".

If you're interested in this issue, Congressman James Walsh of Syracuse, Chairman of the VA/HUD Subcommittee of the House Appropriations Committee, who represents portions of STIC's service area, is a key player. Right now he's not particularly upset about HUD's plans. You may want to contact him to ask how he feels about the prospect of 24,300 New Yorkers being made homeless in 2005, rising to 58,310 by 2009, when over 25% of New Yorkers now living on Section 8 subsidies would lose them.

New York State Budget Update

We can't report much on the state budget negotiations. All parties appear to be deadlocked and at this writing aren't talking to each other. But other interesting things have happened this spring.

Both houses were looking to restore Governor Pataki's proposed half-million-dollar cut to Independent Living, and his $7.7 million cut to local mental health services.

Having learned from the failure of last year's proposal to close some state psychiatric centers, this year Pataki proposed a bipartisan commission to study and plan for such closures. Many legislators and public employee union leaders regard the business of incarcerating people with disabilities primarily as a source of paychecks and votes, and it is mostly for these reasons, not tender concern for discharged inmates, that proposed closures have been rejected in the past. Still, we think the commission is probably a good idea. The state does not have a good track record for transferring all of the money saved by such closures directly into community-based services for people with mental disabilities, and any closure plan absolutely must do this. A commission would provide cover to skittish politicians in much the same way that the federal military base closure commission did in the early 1990s.

The state Assembly has once again supported nearly all of the disability community's legislative agenda items this year. This support, though necessary and welcome, isn't sufficient to get anything done in a state where the governor's office and the other house of the legislature are controlled by the other party. So it's especially interesting to see genuine support for our issues also growing in the state Senate.

Two bills were introduced in the Senate to create a new Medicaid Home and Community Based Services waiver for people with cognitive and/or physical disabilities who are not eligible for other waivers. This is perhaps the most important item on the statewide agenda of disability advocates this year. Both bills--one introduced by Senator Spano and one by Senator Meier--contain good provisions, and neither is a complete solution. They should be combined, passed, and signed into law. It's not clear this will happen, and this may become an important advocacy effort over the summer.

There has also been Senate support--including from our own Senator Libous--for bills to expand the EPIC prescription drug program for elderly people to people with disabilities, and to adopt the ADA's Title II protections against discrimination due to disability by state and local governments into state law.

The Department of Health (DOH) has been working on plans for the One Big Waiver Medicaid reform proposal that we described last issue. Most of the questions we raised remain unanswered, except the one about why OMRDD's Medicaid waivers aren't included in the plan. Allegedly, it's because "state law" forbids combining OMRDD stuff with other disability services. This is a smokescreen, of course. Right now, "state law" forbids the creation of the proposed combined waiver, too. Any state laws can be changed, and some will have to be changed to implement any new Medicaid system. Obviously, some powerful people feel that their personal oxen will be gored if OMRDD's huge Medicaid budget is folded into this program. So much for a genuine interest in saving money. In any case, disability advocates are working to be included at the table as this planning goes forward. It's important to remember that neither Pataki nor DOH can do this on their own, and it's far from a "done deal". The legislature will have to approve any such plan, and there will be plenty of opportunities to influence them.

Meanwhile, there is an elephant in the room that nobody is talking about. You might think I mean the court order the state is under to provide equitable education funding to poor school districts. That's not it, though our leaders, especially Senate Majority Leader Bruno, would like you to believe it is. The latest chapter in budget brinkmanship involves legislators telling human service advocates that they may not get any of Pataki's proposed cuts restored-let alone any increases-because the court order is "sucking all the money out of the system". But the real mastodon in the parlor isn't education funding--it's taxes. The state doesn't have enough money to meet its legal and moral obligations. It's going to have to close corporate welfare tax loopholes and raise income taxes for the wealthiest 5% of its citizens in order to solve this problem. This being a legislative election year, nobody wants to do that. However, it's not a gubernatorial election year, and Pataki is pretty much a lame duck because, historically, the electorate gives a New York governor 12 years and then boots him out. So he has nothing to lose by signing a tax increase. Turnover in the state legislature only occurs when somebody dies, retires or is convicted--and even then, the party of the dearly departed incumbent keeps the seat-so nobody is in serious danger of getting voted out of office for supporting a tax increase or for any other reason. The political calculus will resolve itself around the time when legislators start getting itchy to start the fall campaign, and the solution probably will be a 2004-05 budget very close to the current one, with some new taxes quietly approved to make up the difference.

NCSC: Death Throes at Last?

STIC has learned that the federal government has cut off Medicare funding for the notorious Northeast Center for Special Care (NCSC), but that in what appears to be yet another blatant visitation of political cronyism, the state's Medicaid authority is continuing to fund the facility.

The NCSC is a nursing home that was established as a result of a deal between Governor Pataki, IBM, and Pataki campaign contributor Anthony Salerno. Salerno is CEO of Healthcare Associates, a company that owns several nursing homes in New York that have a track record of substandard services. AccessAbility has reported ongoing serious and dangerous deficiencies at the NCSC since it opened in 1999 following a direct order from the highest levels of the Pataki Administration that overrode the state Department of Health's disapproval of the facility plans.

Details were not available on the latest crisis at the center. However, events in March and April of this year echoed previous episodes in which the facility was cited by inspectors for serious infractions such as providing spoiled food, failure to keep inmates clean, threatening and physically abusing inmates, and failure to provide basic medical treatment or prescribed therapies. This time around, federal Medicare inspectors were called in.

The facility was given repeated instructions to correct problems and repeatedly failed to carry them out. In the end, the federal Centers for Medicare and Medicaid Services (CMS) revoked the facility's certification as a Medicare provider, effective April 26, 2004. However, Medicaid funding is jointly managed by state and federal governments. The Pataki Administration has refused to yank Salerno's Medicaid despite clear evidence that such termination is the only thing that will end the neglect and abuse going on there. As reported by the Ulster Freeman on April 24, 2004, following the announcement that the facility would continue to receive Medicaid funds, Salerno issued a statement in which he said, "We want to thank all our elected and appointed officials for their concern, their understanding, and their commitment to the Northeast Center." The timing and language of this statement immediately raised suspicions that yet another sweetheart deal had been arranged by the Pataki Administration for one of its political supporters, and that the result would be that more people with disabilities would be harmed.

Salerno continued to claim that all the problems at the facility could be traced to the fact that the state won't recognize his nursing home as a special "rehabilitation" program. The NCSC claims to specialize in traumatic brain injuries, but in fact it accepts for admission anyone in need of long term care who has the ability to pay. Salerno is apparently ignorant of the fact that a true rehabilitation facility would be even more stringently regulated than a nursing home, not less.

Meanwhile, Salerno lost another supporter when, according to the Freeman, Town of Ulster Supervisor Fred Wadnola remarked that the facility should be saved but with a "change of administration". Following the last crisis at the facility in 2003, a spokesperson for the Nursing Home Community Coalition of New York State, a nursing home lobbying group, said that perhaps Salerno is not the kind of person who should be in the nursing home business. The time is fast approaching when George Pataki will be Salerno's only friend. It will be instructive to see how long the place stays open after Pataki leaves office. It certainly appears that Salerno and his nursing home will be safe until that day, no matter how many people they hurt.

No More Stolen Lives:

ADAPT Speaks Truth to Power
as STICsters Watch
Disability advocates made a big splash on the national scene this past March. Over a hundred protesters were arrested at the Capitol on March 23 for trying to make Senate Finance Committee Chairman Charles Grassley (R-IA) keep his promise to hold a public hearing on two of most important pieces of federal legislation being promoted by the disability community. And two weeks later, a hearing was held, attended by hundreds more, including some STICsters.

The disability community is pursuing a long-term strategy to end the institutional bias in federal disability support services funding and commit the nation to a path of maximum community integration.

The short-term goal is to pass the "Money Follows the Person" demonstration program. Medicaid can pay for homecare, and other funding sources exist for housing costs, but a major stumbling block to getting people outof institutions are the initial one-time costs to advise and train the person, to make a home accessible, and to set up a household. And the federal government only partially funds Medicaid; states must chip in a matching share (NY's is 50%). Money Follows the Person would give states 100% of the money for all first-year costs to transition people out of nursing homes into their own homes. Thereafter, the state would pay its normal share, which by then would just be for homecare. This idea was first proposed by President Bush as part of his New Freedom Initiative. However, the Bush Administration has not pushed Congress to approve the program, no doubt because Bush's tax-cut-and-still-spend policies have made any new non-military discretionary spending virtually impossible. It took a Democrat, Senator Harkin of Iowa, to introduce a bill in the Senate--S. 1394. Grassley has allegedly been working on an alternative to Harkin's bill with Bush's support, but nobody has actually seen it.

The intermediate-term goal is to pass MiCASSA (S. 971, HR. 2032), the Medicaid Community Attendant Services and Supports Act, which would give anyone eligible for Medicaid-funded long-term care services in a nursing home or ICF the option to have that money support them in their own homes instead. This bill was written by ADAPT in 1997 and later modified to address concerns that it was too radical. It's been introduced in both houses of Congress every year since then, with considerable support each time. But Congressional leaders have refused to make a serious effort to pass it, and neither Presidents Bush nor Clinton endorsed it, nor did Al Gore in 2000. The tentacles of the nursing home lobby and public employee unions reach far and deep.

The long-term goal is to completely demedicalize all federally funded supports for people with disabilities' living, education, and employment needs by moving the funds out of the Medicaid system entirely and into a new Office of Disability Support Services. This would reduce the total cost of these supports, to the point where a state share would not be needed. It would also administer them according to a philosophy of personal independence, integration, and empowerment, rather than as an over-regulated stepchild of a paternalistic medical service system. Services could be provided using a cash & counseling model in some cases, and all living supports could follow a cash & no counseling model (the one used by the hugely successful Social Security Retirement System). There has been, as yet, no legislation proposed for this, but it is the logical next step for national disability leaders.

The action this spring focused on the first two goals. ADAPT had a verbal agreement with Senator Grassley to hold hearings on Money Follows the Person and MiCASSA in order to move the bills along. But Grassley scheduled a hearing on institutional bias in long-term care and refused to put our bills on the agenda. So ADAPT brought over 500 people to Washington to occupy the Capitol and hold a "People's Hearing" on the bills. Grassley didn't budge, but the ranking Democrat on the Finance Committee, Senator Max Baucus (D-MT), put them on the schedule. (Baucus later showed more support for the disability community by getting the Senate's recently-passed budget bill amended to prevent an $11 billion cut to Medicaid.) ADAPT also staged a successful "lie-in" at the Centers for Medicare and Medicaid Services (CMS) to get acting CMS Director Dennis Smith to resume ongoing discussions with the disability community on long-term care issues. And they held a vigil at the White House, and visited the national headquarters of AARP en masse to urge better coordination between the nation's largest senior citizen lobby, and the disability community, on long-term care reform.

On April 7, several STIC staff members and consumers were part of a group of over 70 New Yorkers, and hundreds more from around the nation, who attended the Senate hearing. Rochester's Bruce Darling, the hero of several highly-effective ADAPT actions in Albany, had the honor of giving testimony on what works and what doesn't to get people out of institutions.

Chris Hildebrant, from the Center for Disability Rights in Rochester, reported, "One of my favorite exchanges was when Senator Baucus tried to nail down Dennis Smith on what the White House Administration plans to do in the long-run in order to end the institutional bias. Mr. Smith repeatedly came back to the Money Follows the Person initiative which he had already conceded is a short term demonstration project. Senator Baucus continued to ask about the long-term fix, Mr. Smith continued to evade. In his testimony, Darling provided the answer to the question about long-term fixes: Pass MiCASSA!"

These events generated some good media attention and increased interest in the bills in Congress. Democratic Presidential front-runner John Kerry endorsed both bills. This was a welcome sign because Kerry, a member of the Senate Finance Committee, did not attend the hearing. He felt it was more important to meet with public employee union officials that day--an action that should raise questions among those who would tout him as a "friend" to the disability community. Senator Harkin said he'd received several calls from Senators interested in co-sponsoring Money Follows the Person, and MiCASSA gained more sponsors in both houses.

The next steps are for advocates to keep up the pressure on Grassley and Baucus to move the bill out of the Finance Committee in the Senate, and to contact their representatives in the House to urge them to hold a hearing more specifically focused on the two bills.

Victory on the Courthouse Steps

By now you have probably heard that the Supreme Court has upheld Title II of the Americans with Disabilities Act (ADA) by a 5-4 vote in the critically important Tennessee v Lane case. This is a very real and important victory, and as usual, I'll be throwing a wet blanket on it--but I'll get to that in a moment.

First, the good stuff.

The majority opinion, written by Justice John Paul Stevens (and joined by Justices O'Connor, Souter, Ginsburg, and Breyer), minced no words in stating that Title II, which prohibits discrimination on the basis of disability by state and local governments, properly enforces fundamental civil rights of American citizens. The "ruling" part of the opinion naturally responds only to the facts of the case--that a man with paraplegia was forced to crawl up the steps of a courthouse to face criminal charges because that courthouse was not accessible, and the State of Tennessee claimed that this man could not sue for damages because the federal government has no business telling state governments how to deal with citizens with disabilities. There is more to it than that, of course. This is another in a long series of cases involving the 11th. and 14th. Amendments to the Constitution, and we've explored the (il)logic of those issues in depth in previous issues of AccessAbility. Rather than go through all of that again here, I, like Justice Stevens, will strike out in a new direction.

The majority opinion found that access to the courts is a fundamental civil right, the right to due process, whose enforcement the 14th. Amendment delegates to Congress. Tennessee lost this case not because it was mean to a person with a disability, but because it denied fundamental due process rights to one of its citizens. The Court ruled that Congress, in writing the ADA, had ample evidence that people with disabilities had been systematically denied access to the courts, as defendants, witnesses, and jurors, by state and local governments, and therefore had plenty of justification to impose the remedy it chose on those governments--even though that remedy may cost governments and taxpayers significant amounts of time, effort, and money. That's important in and of itself.

But there's more. Stevens lays out some other fundamental rights that Title II also covers, and for which Congress had sufficient reason to enact enforcement measures. These include voting rights and the right to be free from unnecessary "commitment"--that is, when a government offers support services to people with disabilities, it must not force people into institutions or otherwise unnecessarily restrict their rights and freedoms as a condition for receiving them. So this ruling not only preserves the Olmstead decision, it strengthens it by clarifying that any 11th. Amendment challenge to it is likely to fail.

And there's still more. By focusing on the 14th. Amendment's Due Process clause and shying away from its Equal Protection clause, Stevens' opinion shows the way to put disability rights on much firmer constitutional ground. The authors of the ADA had in mind the notion that people with disabilities, unlike other disadvantaged minorities, really are different from other people and in some cases do need to be treated differently. As well-intentioned as this was, it's been a legal disaster, because once you open the door to that argument, you can jam an entire nursing home through it. It is far better to simply draw a line in the sand and say: All Americans have fundamental civil rights, among them the right to go anywhere that any citizen is allowed to go, and the right to live where and how any citizen is allowed to live. Not only must you not violate those rights for any reason, at any time, for anybody, but you must go out of your way when necessary to protect and enforce those rights. I'd like to spend a few more paragraphs here explaining how this approach neatly derails the increasingly theoretical nit-picking of the Court's right wing in 14th. Amendment cases by asserting that fundamental due process rights enforcement justifies greater latitude for Congress and therefore reduces the importance of "congruence and proportionality"--but I don't have the space.

Instead, I'll get out the wet blanket. There is one odd and confusing point, and a couple of uncomfortably telling points, in the dissenting opinion authored by Chief Justice Rehnquist and joined by Justices Thomas and Kennedy. And it appears that Justices Souter and Ginsburg are supporting disability rights the wrong way for the right reasons.

Rehnquist says there was no actual violation of Title II in Lane's case because Lane was offered the option of having his trial moved to an accessible courthouse in a neighboring town. This certainly would have satisfied Title II's "programmatic access" requirement. (Many people are confused about this. Title II does not require all public buildings to be accessible. It requires new public buildings built after 1992 to be accessible, and it requires government agencies and departments to make their programs and activities accessible, if necessary by moving them to accessible locations or providing aides and equipment, to enable access, if and when needed.) If what Rehnquist says is true, this case never should have come before the Court. We have not been able to verify this. It's inconceivable that Rehnquist would lie about it, and if he did, the majority opinion would have challenged it. (Although Supreme Court dissenting opinions are "in response" to the majority opinion, they are read by the other Justices, and may be addressed in the final language of their opinions, before the entire package is released to the public.) It may be a clue that the elderly Rehnquist is losing his grip. It's also worth noting that Rehnquist's opinion makes it very clear that he personally doesn't "get" that excluding people with disabilities from all kinds of things is unnecessary, driven by fear, hatred and ignorance, and harmful to the moral fiber of society as a whole. He truly believes that people with disabilities are incapable and inferior, and that it is therefore "rational" to discriminate against them, just as the justices who institutionalized racial discrimination in the 1896 Plessy v Ferguson case believed that black people were inferior and Jim Crow made perfect sense. Rehnquist is a bigot, pure and simple.

That being said, Rehnquist makes a stronger claim that if one actually sifts through the evidence that Congress collected while writing the ADA, one will find very little, if any, documentation that State governments have actually denied access to the legal system to people with disabilities, and he points out that Lane certainly was not denied such access because his case got all the way to the Supreme Court. It is absurd, he suggests, to argue that denying unassisted physical access to a courthouse equates to denying the fundamental right to due process in the judicial system. And he is right. He is also right that the majority has gone out on a limb by arguing that a "theoretical" more narrowly-focused law enforcing due process rights, one that is constitutionally defensible, exists within the very broadly written Title II, and that this approach is going to result in a firestorm of Title II cases seeking to find the limits of that "law". Certainly Stevens's opinion makes it clear that just as there may be a group of due process rights that Title II properly enforces, there are also aspects of Title II-such as access to the proverbial state-owned hockey rink-that are not constitutionally defensible and may be struck down.

It would seem that there has emerged on the Court a majority that, irrespective of the logic of past decisions, has put its foot down on the issue of basic civil rights for people with disabilities. Perhaps they have become disgusted with Rehnquist's increasingly blatant bigotry. (Justice Scalia's separate antediluvian dissent, whose main thrust is that the 14th. Amendment was written strictly to prohibit racial discrimination by States and should never have been interpreted to mean anything else, deserves even less attention than it took to write this sentence.) The concurring opinions by Justices Ginsburg, Souter and Breyer certainly indicate a united front in support of disability rights. Unfortunately, those well-intentioned opinions, much lauded by some disability advocates, point in the wrong direction. Ginsburg wrote, "Including individuals with disabilities among people who count in composing 'We the People,' Congress understood in shaping the ADA, would sometimes require not blindfolded equality, but responsiveness to difference; not indifference, but accommodation." As the legal history of the ADA has proven, that is dead wrong. Blindfolded equality, accompanied by vigorous enforcement, would serve the disability community far better than on-again, off-again "accommodation".

Special Ed Special Section

Recent events have combined to focus our attention on how children with disabilities are educated. It is the 50th. anniversary of the Supreme Court's Brown v Board of Education decision, which found segregated education to be inherently inferior. A milestone was reached in the IDEA (Individuals with Disabilities Education Act) reauthorization process, when the Senate passed a bill that, while better than the House's version, is still unacceptable. After a report on test scores showed a huge gap in educational achievement between children with and without disabilities in our state, the NYS Education Commissioner publicly admitted that our special education system has gone very wrong and must be put right. The ongoing complaints that we get from parents have escalated due to the shenanigans with BOCES PALS "recruitment" and IEP signatures that we mentioned in our editorial. And, the state held a public forum on education at Broome-Tioga BOCES on May 27, on which we'll report next issue.

What could be more important than the future of our children? The single most cost-effective reform we can make in disability policy would be to fix special education. Properly-educated children with disabilities are much more likely to become self-supporting, fully-contributing members of society than are the kids who today are shuffled around on the "special bus" from one isolated, non-academic "special program" to another, and who, because school has not taught them anything they can use to build a life, will either drop out and hit the streets, and, later, the prisons, or be dumped, at "age-out" time, into group homes and sheltered workshops or "day programs".

STIC is going to escalate its systems change advocacy in the area of education in the coming months and years. Anyone who wants to help is welcome to join us. If you're still wondering why this is important, read through our Special Ed Special Section and learn.

IDEA Passes the Senate

The US Senate passed its IDEA reauthorization bill on May 13 by 95-3. Many of our alleged "friends" on this issue, including Senators Kennedy and Harkin, voted for the bill, which still contains unacceptable provisions on student discipline. We've reported exhaustively on this subject in previous issues; please see them for details.

Before passage the bill was amended. Most of the amendments were trivial.

One of them, which brought IDEA into conformance with other civil rights laws, says that people who file "frivolous" or "harassing" lawsuits can be made to pay the defendants' costs. Some advocates claimed this would discourage some parents from taking legal action. As far as we can see, this is a non-issue. There don't seem to be any cases in other civil rights arenas where these kinds of limitations have posed problems.

Another amendment creates a "paperwork reduction" demonstration study similar to that in the House bill. Unlike the House version, it lets up to 15 states take part instead of 10, and it specifies that nothing in such a demo can infringe the civil rights of children with disabilities or their families, including the right to a free appropriate public education, or loosen procedural safeguards. STIC continues to maintain that the paperwork currently required by IDEA hasn't benefited the vast majority of students with disabilities who have received an inferior, segregated education under the law, and that making things simpler is likely to increase compliance with crucial requirements, if handled properly.

An attempt to mandate "full funding" of IDEA by the feds predictably failed, but the bill was amended to add a schedule to achieve "full funding" over 6 years. "Full funding" is traditionally assumed to mean that the federal government will pay 40% of special education costs, as stated in the original law 30 years ago. Actual funding has never approached this level, though the Bush Administration says its 2005 budget proposal will bring it to a record high of 20%.

The Administration also released a statement that "supports" the Senate bill while strongly opposing accountability requirements that could result in loss of education funding by districts or states, local districts being taken over by a state, or state education agencies being taken over by the feds, in cases of egregious noncompliance. STIC believes such actions are appropriate, and in fact are already indicated in some cases. However, we also think it unlikely that such actions will be taken until a class-action suit on behalf of aggrieved parents and children, or perhaps advocates seeking to recover excessive costs (as the Liberty Center for Independent Living in Philadelphia did over the transportation access issue some years ago), is won. In any case, Bush did not threaten a veto if the final bill doesn't address his issues, which is hopeful.

The focus now shifts to a House-Senate conference committee, which must reconcile the many differences between the two bills. As of late May, the Senate had refused to appoint any conferees to the committee until it received assurances from the House side that there will be genuine compromise. The House bill is much more dangerous to children with disabilities, especially on the issues of discipline (where it removes all special consideration for misbehavior that is genuinely due to disability), and attorneys' fees (which it requires Governors to cap, unlike any other civil rights law in American history). There is no guarantee that a final bill will be much like the Senate version.

Advocates remain very concerned about this issue, and parents of children with disabilities should be too.

Local Special Ed Programs Flunk State Tests

In mid-May the Binghamton Press & Sun-Bulletin reported that children with disabilities of all ages and in a wide variety of communities across the state did much worse on standardized tests than nondisabled children in 2003. For example, only 8% of eighth-graders with disabilities passed the state English test and only 16% passed the math exam.

While statewide the larger cities tended to have the worst scores, some horrendously low scores in the Greater Binghamton region's wealthier districts underlined the fact that the problem isn't necessarily money, it's attitude:

In Vestal, just 19% of kids with disabilities passed the eighth-grade math exam, as opposed to 71% of nondisabled students. In the Maine-Endwell district, a meager 12% of children with disabilities passed that test, but 76% of nondisabled kids did. In Chenango Forks, 14% of disabled students passed the 4th. grade English test, compared to 66% of nondisabled kids.

This is not to say that our local urban districts are doing well. The Binghamton School District, a perennial special education disaster that has been timidly labeled by the State Education Department as a "school in need of improvement", had 14% of disabled 4th. graders pass the state English test, as opposed to 67% of the nondisabled kids in that grade.

Comments from local educators quoted in the Press & Sun-Bulletin focused on the districts' efforts to reduce the number of students who are classified as having disabilities, rather than on what it takes to properly educate them.

NYS Education Commissioner Richard Mills was quoted as saying, "This is completely unacceptable and we have to overcome this problem." For more of Mills' remarks, see our editorial.

Just One of the Boys

by Susan Lozinak

The quest for the perfect school environment for my son Johnny began on the day he was born. After the shock settled in when I was told that he had a heart defect and Down Syndrome, I worried about his immediate health. I then focused on many questions about his future--would he walk, talk, have friends, play sports, drive a car, go to college? I was really wondering if he would be able to lead the life that I had expected and dreamed for him.

As my third son, I knew that I wanted him to experience all of the things that my other two boys have done. With a few accommodations and adaptations this has been possible. He attends sporting events too numerous to list, movies, recitals and competitions. He has shopped, vacationed, and dined at many fine restaurants. He is with our family all of the time and we have not changed our schedule because he is "special", although he sure is special and wonderful to us.

Johnny will turn 5 years old this October, which signifies the end of services through the Committee for Preschool Special Education (CPSE) and will leave his integrated preschool to join the world of "big school". When I was considering where he should be placed, I suddenly felt the need to protect him because he will be so little and young. Maybe a special class with fewer students would be perfect. I visited every possible option, from typical preschools, BOCES classrooms, and special ed classes to typical kindergartens. Nothing felt quite right and confusion and anxiety set in. It was suggested that he might do best in a setting that would require a 3-hour bus ride per day in a district that was many miles from our home.

I realized that in order to make the right decision for Johnny and our family I would have to concentrate on the things that mattered to us most. I kept coming back to two words: participation and expectation. I wanted him to be able to participate in many activities with children his own age, who live in our neighborhood and are the little siblings of the friends my older boys play with. Johnny is a social butterfly who thrives on social interaction with anyone and everyone that he meets. He is making friends with strangers and shaking hands--we call him our little Ambassador.

Some of the special classrooms that I visited seemed to be confining and remote for a child like this. They made visits to the typical classes, but most of the interactions appeared to be more one-on-one and interaction between groups was at a minimum. Children with many different disabilities were together but separate. I wanted to find a class where he could participate to the best of his abilities and be valued for this even if it is not what all of the other students may be doing. I know it may not be the safest and easiest path for him but it will offer him the most opportunity.

The next wish involved expectation. I wanted a class where great things were expected from Johnny and where he would learn to expect the best from himself. He is so proud of his accomplishments now that I wanted his efforts to be valued. He often surprises me and exceeds my expectations, so a little challenge would be beneficial for him. I look forward to the day when he will talk, read, write, graduate and be looking for the perfect college experience. These may seem like lofty goals but they are all possibilities for him and should not be ruled out. If they do not happen it will not be for the lack of trying.

He deserves the best chance for a happy, productive future. This involves education and I decided that is the path he will start on. He will attend a typical kindergarten class in his home school this September, supported by a one-on-one aide, OT, PT and speech therapists, a direct consultant special ed teacher, general ed teacher, bus monitor and a classroom full of future friends. I expect he will learn the most from them and maybe teach them a thing or two along the way. I am sure he will change the conceptions of many people he will come into contact with. I know in my heart that this is the best choice for now and tomorrow will come with different challenges and wishes for Johnny. For today I hope he experiences life with all of its ups and downs and can be just "one of the boys".

Integrated Summer Services Aren't

by Nancy Garcia

My son supposedly gets integrated summer services, but the BOCES kids and the "regular" kids spend more time apart than together! I have noticed over the last few years that my son regresses in some ways during the summer, even though I know it would be worse with no summer program. He makes friends with other BOCES kids, which is great, except he imitates their behavior.

I would love to see my son in a truly integrated program, where the BOCES kids and the "regular" kids are actually together for the whole day! The "regular" kids in his class during the school year (he is mainstreamed) have learned a lot about tolerance and friendship through being in a class with my son. And, of course, my son learns a lot from them about socialization, etc. This type of interaction simply does not occur during the summer!! My son is "with his own kind", and the "regular" kids aren't learning anything through this segregation, either! All the kids are learning is about how some kids are different, and they play over there. We are the same, and we play over here. Separate busses, separate teachers--why?

Blue Paint Nightmare

by Eva and Daniel Fitzsimmons

In December of 1990 my husband and I were blessed with the arrival of our third and last son. Life was wonderful and complete. Two years later, after he received five immunizations in one day, our life was turned upside down. Our baby stopped talking. He started flapping his hands and acting as if he were deaf. He was diagnosed shortly after that with autism. Thus our entry into the world of special education.

The Broome County Health Department was a godsend. They stepped in and arranged everything from the initial evaluation under the Early Intervention Act to the transition to the Committee on Preschool Special Education. It was only when we began working with the school district Committee on Special Education (CSE) that our nightmare started.

We live in the Susquehanna Valley school district. Our son started school when he was 2 1/2 years old. He is now 13. In the ten and a half years he has attended school he has been in five different districts even though we still live in the SVSD within walking distance of an elementary school and the Jr/Sr High. This in itself is a nightmare. I firmly believe that all school districts should be made to include all of their residents no matter what their ability. If Johnson City can do it everyone should.

Our son started out in the Windsor district in a BOCES preschool class that was wonderful. Then SV's CSE decided he should go to the "expert" on autism at the Binghamton University Children's Unit. He was there for four years. His last day came when the "expert" decided he would teach my son a lesson by tying him in a chair until his arms were bruised and he was traumatized. My son's arms were then covered with blue paint so no one would notice the bruises until he arrived home.

No one could provide a satisfactory explanation for this. Our son was brutally attacked and this is CHILD ABUSE, but the state refused to investigate because the state's social services agency does not investigate higher education institutions!!

So we sued BU. It took four years to get to court and all of our savings account. During those four years we learned that our son never received any speech (he remains nonverbal to this day), occupational, or adaptive physical education therapy as per his Individual Education Plan (IEP), and that no licensed therapists ever worked at the Children's Unit while our son attended. In his records, people signed their names with credentials that didn't exist to document therapies he never received. These complaints were included in our lawsuit. The judge ruled that while all of our allegations had merit, they were educational malpractice which is not punishable in the state of New York!! How about that!! This was not only a violation of IDEA, it was fraud. Yet an education agency can take tuition from a school district for the special education of a child and not have to provide that child with anything that is written on his IEP, and not have to account for their actions either!!!

We picked up the pieces of our lives and moved on. Our son's first class after the Children's Unit was in the Chenango Forks district, a BOCES kindergarten/first grade that was wonderful. From there he transitioned to Benjamin Franklin Elementary, where he stayed for four years. He made great progress during those five years in inclusive settings. Then he aged out of the elementary programs and there was no inclusive setting for him to go to. The one available class was filled to capacity. So my son was transitioned once again, to the BOCES PALS campus!

What we found at PALS was chaos. The staff is not trained in handling or teaching children with autism. In fact my son's IEP wasn't even looked at until February of this year, five months after starting there! Needless to say everything, especially his communication skills, have regressed. He has lost two years because of disorganization and lack of properly trained professionals and paraprofessionals in the field of autism. This year would be a total loss except for the fact that our son's personal aide from Ben Franklin moved with him to BOCES--but his hands are tied because the resources he needs to help our son are not available to him. Now it is spring and CSE meetings are taking place for fall placement and once again our son has no place to go! So much for "No Child Left Behind".

I have friends who have children on the autism spectrum who are facing the same dilemma. Children with autism need programs designed for their unique needs; they can't be made to fit into programs designed for other disabilities. New York State is failing miserably in the education of students with autism. Please tell us and our son why, because he has autism, he can't go to the school his brothers go to, he has to ride a bus for an hour or more to and from school each day, and be mistreated in a school where no one wants to bother to teach him in the way he can learn, even though the State Education Department has a four-page guide for teaching children with autism already in place. It is a great set of guidelines; too bad no one enforces such things.

Every parent has anxiety that first day they have to put their son or daughter on that bus for kindergarten. Having a child with special needs is that first day of kindergarten every day. We have to wonder: Will our child be treated with dignity today or will someone lose their temper and hurt my child today? Will they be treated with kindness or indifference? Love or hate? Will they be accepted as a human being or treated like a piece of dirt? Parents are a huge part of special needs kids' lives. They and their experiences with their children should be embraced by educators, not shunned and pushed away as is all too often done.

We are willing to help get a suitable program up and running for children with autism. Something needs to be done immediately, before any more time passes. The need is urgent. Some parents have had to pack up and move out of this area to find suitable programs for their child with autism. This should not have to happen.

Inclusion Is Alive and Well in JC Schools

by Jo Anne Novicky

As a service coordinator, I've worked with many families of children with disabilities. Many years ago I worked at a local preschool that provided segregated services and I was very involved in turning it into an integrated preschool, along with many other individuals who were committed to inclusion of all students with disabilities. Our hope was that if the path to inclusion for all students began as soon as possible, the chances for it to continue for the student would be greater. The State, the community and the local schools supported inclusion in preschools. Slowly the school-age population would, we thought, also gain more inclusive opportunities, accompanied by increased education for school staff on accommodating students with disabilities.

I have been greatly disappointed with the quality of services for many children who are in public schools and have special needs. It is also very upsetting to see schools increasing their recommendations for segregated settings. Lately, I've been to many team meetings and CSE meetings where the classroom team have been very negative toward the child. There have been many comments in exasperated tones, such as, "He's not motivated." "She takes too much of my time." "I don't think it's good for the other children to have to see all the equipment." "His progress is too slow." and on and on! The parents feel that their child is resented, and so they face one more obstacle in providing for their child's needs.

As Service Coordinators, it is our role to support the parent and child. One particular day, after several difficult meetings and seeing how stressed parents were becoming, I began to feel somewhat defeated and questioned the future of inclusion in public schools. At that point I went to a team meeting at a Johnson City elementary school for one of the children that I work with. This child has significant delays and requires a great deal of assistance. His parents have had a great deal of concern over behavioral issues as well. When I arrived at his meeting I found the most dedicated caring staff! His general education teacher started the meeting with the comment, "He has been a blessing to our class. We have all benefited from having him with us this year." His special education teacher showed a video of the child and the skills that he had gained. He was exuberant over the child's progress. The rest of the team also talked about this child in such positive terms and with such respect for the child and his accomplishments--while still discussing areas that he could use more assistance with. If this child were in another school with a different team I'm sure that he would have been viewed as a behavior problem and a child who was not making gains quickly enough.

I left that meeting knowing that inclusion is not "pie in the sky" but is the right of students and their parents. Inclusion done well benefits all of us, and parents should feel confident that their child will be accepted, appreciated and educated in their home school. As I attend other meetings, I hold on to the memory of that meeting on that day and know what is possible, and why we all need to make such an effort to keep the doors to inclusion open.

Self Help Issues & Answers

Children's Mental Health Task Force

by Maria Dibble

Over the last few years, STIC has seen the loss to our community of what were already very limited psychiatric and pediatric services for children with developmental disabilities. After discussions with other providers, we decided to put together a Children's Mental Health Task Force to more clearly define the issues and seek solutions for our community. STIC has no interest in providing these services, but is rather serving as a facilitator in bringing medical professionals, educators, providers, social service and mental health agencies, parents and advocates together in an open forum to brainstorm ideas and solutions. While both children and adults are mentioned, our primary focus is children.

At our first few meetings, we outlined the following issues and concerns:

  • Lack of services in Broome and surrounding counties: There are simply not enough qualified psychiatrists and pediatricians to meet the specific needs of children with developmental disabilities. Parents often take their children to Syracuse, Albany, and even out of state for desperately needed evaluations and diagnoses. This chronic shortage is not limited to our community and will take some very creative strategies and all of us working together to resolve.

  • Difficulty obtaining psychiatric evaluations due to shortage of pediatric psychiatrists: Some children have waited 10 - 18 months for an evaluation. Schools seem to have better luck, but they too have a fairly long delay in services. If a child is in crisis, one day could be too long!

  • Psychiatrists will usually not treat children or adults with developmental disabilities: Many feel unqualified to address the needs of this population. Often, if the children/adults are classified as mentally ill or with an emotional disability, and then are reclassified as DD, they lose the psychiatric services. There appears to be a turf war between OMRDD and OMH on this issue.

  • sychiatric services not available to Medicaid recipients: Medicaid pays so little for psychiatric evaluations and related services that most providers and practitioners can't afford to accept Medicaid as a form of payment.

  • Lack of comprehensive psychiatric services Children may be able to get an evaluation but then can't secure follow-up services. Or, some agencies may only agree to provide the evaluation if they know comprehensive services will also be needed. Either way is problematic for consumers.

  • Children with traumatic brain injuries have almost no psychiatric services in the area: There are very long waiting lists for evaluation and treatment.

  • Pediatricians need support to assist with medications: They are often not qualified or able to prescribe appropriately for children (especially if the child is on a number of medications). Children's needs change quickly and they require the supervision and consultation of a psychiatrist for effective treatment. Once children are seen by a psychiatrist, there might not be another available appointment for months. This could be dangerous in terms of medication management and the well-being of the children and their families.

  • Difficulty getting services if the child has dual diagnoses, or if diagnosis is not clear: Many children are falling through the cracks.

  • Confusion in how to access the mental health system: It would be good to have a single point of entry for children and adults needing psychiatric services no matter what their other disabilities or funding sources may be.

The Task Force is gathering information and discussing models to address these concerns.

We envision a multidisciplinary approach to meet the complex needs of these children and we are exploring many options, including "tele-medicine". We will also survey providers, schools, etc. to identify the numbers of children needing specific services, and we will develop a strategic plan to find funding and resources to resolve the issues.

This is a very exciting task force, with people of many backgrounds and experiences bringing their knowledge and expertise together to brainstorm and problem-solve. We are not interested in blaming anyone for the problems; we are trying to take proactive measures to be part of the solution. If you have an interest in joining us, please contact Maria Dibble at with your name and address so you can be added to the mailing list.


by Amber George

Want to learn the scoop about what's happening to improve Independent Living in our community? Are you interested in making change for people with disabilities? Would you like to meet new people and socialize? Well, now is your chance! Join SAIL (Systems Advocates for Independent Living) and become an advocate!

SAIL is a group of people who meet monthly to discuss and identify real issues that affect local people with disabilities. We are also people who are affected by disability issues through personal experience, family members, and friends. Our mission is to educate legislators and fellow citizens about disability awareness. We are proud to be affiliated with STIC, since through the years STIC has been involved with numerous advocacy actions in our community. Over the years, we have fought hard for the disabled community to increase the availability of housing, accessible transportation, and consumer controlled community-based services.

As a group we participate in projects such as making phone calls to legislators, going to public rallies both locally and in Albany, contacting the media, writing letters, sending emails, and much more. SAIL is also looking for advocates who might like to do advocacy actions from their own computer. These Action Alerts typically involve lobbying for changes concerning personal care, transportation, housing, education, and voting reform. The Action Alerts are formatted to provide the advocate with information and assistance to effectively write the emails and/or the letters on the specific issue. These are very simple actions that make a world of difference! Every email, letter, and phone call counts. This is an opportunity to be involved with a much larger force of disability advocates across New York State.

SAIL meetings are held each month, typically on the third or fourth Tuesday, from 6 - 7:30 pm, at Southern Tier Independence Center. Come join us in our efforts to improve independent living in our community! For more information, contact:



It's hard to believe that this spring marks our 15th. Annual Campaign. So much water under the bridge. So much of your money passing through our hands. So much more needed.

This year, as last year, all proceeds of our Annual Campaign mailing will go toward renovating our new building located at Frederick Street, in Binghamton. By the time you read this, you should have already received our letter, with its cute little return form and envelope. All you need to do is fill out the form, write a really big check, put both in the envelope, and mail it back!

Remember that every $15 you give us will be matched by one dollar from the Decker Foundation, up to $100,000. That means we need $1.5 million from you. (Don't worry, we will take large bills.) Seriously-the total cost of the project is over $2 million, so we really need your help.

If you want to give at work, you can designate STIC as your "donor option" for the United Way or SEFA. (Yes, if you work for IBM you can do this, though you may need to get your supervisor's help to fill out the form.) STIC is not funded through the federal employees' Combined Federal Campaign (CFC). If you work for the Postal Service or other federal agency, please make a direct contribution to STIC instead.

If you give us specific permission to publicize your gift, your name will be acknowledged in this newsletter. We extend our thanks in advance!

Eat for STIC!

Southern Tier Independence Center staff will hold a Sponsored Cookout at:

Sam's Club, Vestal
Saturday, July 10, 2004
10 am - 5 pm

Hot dogs, hamburgers & soda

Funds raised will support our Capital Campaign. Sam's Foundation will match
the amount raised by the cookout so it can be a profitable day!!

Support STIC's Capital Campaign & have a hot dog or hamburger!!

Join Us!!!!


by Kristin B. Greeley

Legal Services of Central New York provides free legal advice and representation to eligible individuals with developmental disabilities living in the Southern Tier. The office works under contract with the NYS Commission on Quality of Care, which disperses federal grant money to protection and advocacy (P&A) programs.

Services are available to individuals whose disability manifests itself prior to age 22, although clients may be any age, and who have a legal problem related to their disability. Main areas of representation include special education, care and treatment of persons living in facilities, discrimination, and financial entitlements. Case acceptance is evaluated on the merits of the case and Legal Services of Central New York's available resources.

Legal Services of Central New York covers the following eight counties in the Southern Tier:

  • Broome
  • Chenango
  • Chemung
  • Delaware
  • Otsego
  • Schuyler
  • Tioga
  • Tompkins

Contact Legal Services at (315) 475-3127 and ask for the Protection and Advocacy Unit.

You Can Help People with Disabilities Make
Real Choices about Long-Term Care

by Darlene Dickenson

Real Choices is a pilot program funded under a New York State Real Choice Systems Change Grant awarded to Broome County CASA. Its purpose is to assist elderly and disabled people with finding and obtaining the long-term care services they need to stay in the community. Broome County CASA has contracted with Action for Older Persons, Inc. (AOP) to implement a volunteer program to provide guidance and support for community members in need of long-term care services. The project also includes a community education series and one professional education program.

STIC is pleased to be part of this inter-agency collaboration by participating on the Real Choices Advisory Committee and by assisting AOP with its efforts to recruit and train volunteers. CARE (Community Advocacy Referral and Empowerment) volunteers will learn the basics of navigating the complex long-term care system. Training will include where to refer people for services, how to assist people to set up services and how to be an advocate. After training, volunteers will be matched with people in their local communities who need assistance. The role of the volunteer is to provide "neighborly" support, which may be offered either by phone or in person as needed. Volunteers will not be asked to provide any hands-on care or to make any decisions about the type of care that any person requires.

The time commitment is extremely flexible and all CARE volunteers will receive ongoing training and support from Action For Older Persons. If you are interested in helping people in your community access supports and services to meet their long-term care needs, please contact:

Mary Vivona
Action for Older Persons, Inc.
(607) 722-1251


Summer 2004
Issue No. 75